Me Too

I have a confession and some apologies to make.  I confess to feeling more sympathetic to my disabled son's needs, than to my other children's. I know that the reason I have felt this way is because he was given this unjust life sentence of having a progressive tumor disorder.  He has had to endure endless specialist visits and procedures, has struggled with learning, has an uncertain future; so this seems perfectly natural, doesn't it?  

In retrospect, I have this horrible feeling of guilt (any mother's plague) for behaving this way.  I keep seeing my youngest daughter's crumpled face, eyes wide, sometime around the age of three, as she pleaded with me: "Me too."

It was a normal cold winter's day in our home. The older kids were at school and I was getting the younger two ready for their respective preschools.  Although she is younger than her brother, I left my daughter to struggle into her snow pants, boots, hat, scarf, mittens and coat by herself.  Meanwhile, I attended to my son, who could not even manage his own coat, never mind attempt snow pants and boots!  I got him zipped, tucked, bundled, and.. screaming because he couldn't bear to be so confined by clothing. I didn't even notice his sister fumbling with her mittens as I hurried them out the door to get him distracted by a video in the car.  She held the mitten up to me and assaulted me with her request, "Me too."  In my frazzled state, I was even irritated by her incompetance!

What kind of unrealistic expectations have you placed on your unaffected children?

Here is my list of transgressions:

1. "You should be more patient with him because it's not his fault."

Why is this unrealistic? First of all, ALL brothers and sisters annoy each other. How am I preparing my children, all of them, for the real world if I try to protect them from each other? 

In the end, their family is going to be their safety net. If they aren't permitted to feel natural feelings of annoyance and disappointment in one another, they won't learn how to test that net.  My hope would be that they would learn to cope with those feelings within the safety of their own family and take that knowledge with them into life.   

Maybe, just maybe, it will teach my unaffected children how to evaluate each person they meet with a broader perspective and it could teach my affected child how to let comments and gestures from others roll off his back with a little more ease.

   2. "You need to figure it out on your own."

How many times have I expected my other children to tie their own shoes, attempt their own homework, find their own rides, solve their own problems, because I was "busy" with their brother?  Too many times to count. 

Although I do feel some guilt about this, I don't think this was entirely a bad thing.  I think that often times, we are too quick to solve our children's problems for them. We don't want to see them struggle. I don't know where or when we decided to be this way, it was definitely not from our parents! I don't remember a time that I asked my parents for help with homework. Seemingly, our parents' generation knew that kids needed to struggle in order to develop their brains for critical thinking and to empower them with problem-solving skills.  There are whole articles written on this topic.

I do regret not having more patience with them. I was so often overwhelmed by my son's needs that I often felt irritated when my other kids asked me for help. 

  3.  "I expect more from you."

I saved this one for last because it is the sum and substance of it all. I may have never actually uttered these words to my children, yet there is no doubt in my mind that they know this.

 This one is not as much of a regret for them as it is for my son. By expecting more from his siblings, I have actually expected less from him, haven't I?  I have always encouraged him to work hard and be his best, yet, I fear for him more often than I do the other kids. I fear that he won't be ready for college when his peers are. I fear that he will not find a job situation that will show him compassion. I fear that the world will be cruel and unkind. I fear he will be alone, in pain, unhappy...I could fill this page with my fears.

Of course, I have the same kinds of fears for all of my children, but the feelings are so much more intense when your child is born at a disadvantage.  I know in my heart, that the others are going to be just fine even though they have all had their own struggles in life. I don't have the same confidence for him.  This is the most troubling aspect of all.

Now for my apologies:

To my Biggest Kids, 

I expected the most from you. You were so much older and in my mind, less needy. I know now that this was not the case. You were just as needy, but your needs were different. I am sorry that I may have made you feel insignificant at times. I am sorry that I made you grow up faster than you should have. I am sorry that I expected you to know certain things, to be more compassionate and to have an understanding beyond your years. Just as your brother didn't ask to have NF, you didn't ask to have a brother with special needs.  I love you with every ounce of my being and wish for every happiness in your life.  You are strong, you are capable and you are amazing. You are not inconsequential in any way.  There are some very important life lessons that you learned by being his sibling.  I don't wish to discount that, but you may, at times, have felt less important to me and for that I apologize.  I never wanted you to feel that way.

 To the Baby,

You may have been born last, but you were not often given the opportunity to be the baby.  Having a "bother," (which you quite aptly misspelled on one his birthday cards) who needed so much attention from me, was often unfair to you.  I have expected things from you that were far reaching for your age.  I've expected you to take care of him, to watch out for him, to include him and to have more patience than any sister ever could.  You have always risen to the occasion and have sacrificed much of your own identity to be a "good" sister.  You have traveled countless miles, sat in waiting rooms, entertained your brother during recovery periods and shown compassion beyond my expectations.  You have never complained about any of this and you have never expressed any wish to have it be different.  I am so sorry that I didn't have more patience when you needed me also. I am sorry if you ever felt left behind.  You are a special girl and you have such empathy within you; not many are given that gift. I just want you to know that I love you and respect your kindness more than I can ever express.  My hope is that you will never again in your life have to say, "Me too."

My confessions are made and my apologies have been expressed. Do I think that with hindsight, things would have been any different? Absolutely not. We are human beings. We do the best we can in any given situation. Having a child with NF can be very stressful on so many levels. We have to cut ourselves some slack because our expectations of ourselves are often the most unrealistic. We find ways to make all of our children feel valued and loved, but the truth is that circumstances determine who needs the most from us and our other kids find their way. They learn to be stronger and to have more compassion for others. They are better equipped in life than their peers.  Perhaps they need special times alone with us to compensate, but what I say to that is: "Me too." It's a win/win situation. 

Alli-Sunshine

 Two years ago, I noticed a teen-ager looking to make NF connections on Facebook. This conversation ensued:

• Conversation started November 7, 2011
• 

  11/7, 8:59pm
  

  Allison Sovie
  

  
  

  I I got your friend request is it ok if I talk to you before I accept your friend request I just get kinda nervous about this stuff ..
• 

  11/7, 9:23pm
  

  Connie Brisson Sorman
  

  
  

  Absolutely. I saw you were asking for other pages with discussions about NF. I'm the president of the Western NY chapter of CTF and I am always involved in discussions about NF. I have a 14 year old son with NF1-Jesse.
• 

  11/7, 9:29pm
  

  Allison Sovie
  

  
  

  Alright thank you ! I am 14 years old freshman in high school my doctors don't know what type of nf I have and I am the only one in my family with nf ... .. I'm not really involved with nf stuff but I want to be !!!! Not many people know about it where I live .. I want to teach people about nf
• 

  11/7, 9:35pm
  

  Connie Brisson Sorman
  

  
  

  Well perhaps you can join in one of our chapter activities and get to know some others with NF.
• 

  11/7, 9:47pm
  

  Allison Sovie
  

  
  

  I would love to join in on that stuff !

  
  

  
  

 I didn't hear from Allison again for an entire year, but when I did, a connection was made that bound us together for all time.

As NF advocates and Children's Tumor Foundation volunteers, we are often the first NF affected person with which a new family has contact.  We have this awesome responsibility of giving each one a memorable first impression.  Whether we foster that friendship ourselves or make a connection to another individual with similar circumstances, we are in the business of building relationships.  Sometimes these relationships are brief and sometimes they are lasting, like the one I have with Allison.

As a 14 year old, Allison Sovie became curious about meeting other people with NF. Being from a small town near Binghamton, NY, she didn’t have much knowledge about her diagnosis and had never met another person with the disorder. On November 7, 2011, she posted on Facebook looking for information. I requested her as a friend and, because she is a wise and responsible girl and I was a stranger at that point, she asked me a few questions before accepting my request.  We had a brief, online conversation, and then I didn’t hear from her again for almost a year.

On October 30, 2012, she emailed me through Facebook for advice about her symptoms, her friendships, and how to incorporate NF into her everyday life. She felt ashamed and isolated with her diagnosis and wanted to make changes. It took a lot of courage for her to make contact and begin the process.

We quickly struck up a friendship and graduated from Facebook messaging to texting, and eventually she gathered the courage to FaceTime with me, my son Jesse (who has NF), and my daughter Alexa. That was the first time that she ever spoke to another person with neurofibromatosis.

After weeks of complaining about persistent headaches and clumsiness, I told her about the NF Clinic in Rochester and her mom made an appointment. Luckily, they moved quickly because Dr. Mulbury didn’t agree with Allison's previous neurologist’s opinion that the tumor on her cerebellum was stable. She immediately ordered an MRI and set up a consultation with the neurosurgeon at the Clinic. It was decided that Allison needed to have the tumor removed.

The first time we met face-to-face was in the waiting room of the URMC NF Clinic.  My initial thought was about how tiny and fragile she seemed. Although we had been communicating for months by now, she was very quiet and shy. Granted, she had a lot of information to process that day: brain surgery, tumor growth, a new NF doctor, and meeting me for the first time, yet even with all of that on her mind, all she wanted from me was a hug. I was happy to oblige. 

Allison and I at the NF Forum Nashville, TN Walk 2013

Before the surgery, Allison and her mom, Tracy, were lucky enough to attend CTF's 2013 NF Forum in Nashville through a grant from the 

NF R.A.C.E.R.S., an organization formulated to grant assistance to NF families living in New York who are in need.  At the Forum, both Allison and Tracy were able to connect with many other families and individuals with NF and make new friends.

Allison’s surgery and recovery took place over this past summer. She is doing well and will continue to be monitored with regular MRIs.

Just a year ago, I didn’t even know Alli-Sunny, as I refer to her. Now, because she was brave and curious and overcame her fears of learning more about NF, she and I are inseparable. I care for Allison as if she were family. She is kind and sweet and smart and funny. I am so happy that Allison reached out to me and to others in the NF community. Now she can walk with her head held high and feel no shame about her diagnosis. She is a true NF Hero.